What Type of TOS Do I Have?
 

I have been told I have TOS - but I would like to rule out arterial type (If I am that lucky). I can't think I have venous but am concerned about the ATOS variety. For as "rare" as ATOS seems to be, it would seem be a lot more common than I'd hope on this forum.

Am considering going to a vascular person for an opinion, which I would assume to be a physical evaluation and a doppler ultrasound? My questions...

When I look at this page:
http://surgery.wustl.edu/TOS_Arterial.aspx

And compare my symptoms to the list:

• A sudden onset of hand pain and weakness
  
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  seems a lot of people have that with NTOS

• Numbness and tingling in the hand or fingers
  
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  I've been told my cold fingers could be autonomous nervous system (spelling?) I don't get the paleness

• Cold and pale fingers
  
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  seems a lot of people have that with NTOS

• Chronic arm fatigue with use or claudication
  
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  seems a lot of people have that with NTOS

• Non-healing wounds or ulcerations in the fingers
  
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  okay, so i don't have those

I don't have the ulcerations, but couldn't those symptoms be neurogenic too? They seem pretty broad and it's a little tricky to tell what exactly I have. I have been improving in PT, but am still getting the numbness and pins and needles which has me a little concerned.

For those with ATOS, can you talk a little about your symptoms versus that of regular NTOS? For those with no extra rib, how have you fared without surgery if that was an option?

Can I go to pretty much any vascular surgeon, or should I see one of the recommended ones in the stickies? Just concerned about going to someone who will simply tell me they want to cut me up. And don't want to go prematurely to someone who will see me as a surgical candidate if it can be avoided. Want an unbiased opinion, if possible.

Never saw a response on this, so I thought I would share a snippet I found from one doctor's opinion on trying to distinguish between neurological and arterial TOS.

Have an appointment with a vascular surgeon just to get an opinion on my symptoms. Hoping he will rule out anything dreadfully serious so I can continue on with trying to PT my way out of this mess.

Often it really helps to see a few drs or surgeons & a few PTs - to get their expertise, more or less, then add in what you have learned here and on the other medical websites then reason it out as to what you feel it is.

Ruling out any other causes or even co conditions, has to be done, just to be sure it is nothing else.


I may have missed it, did you list all of your symptoms already?
Sometimes making a list here & one for yourself to show drs -
from the most bothersome to minor ones - even symptoms that may not seem related to TOS is a good and helpful thing.
We may see a pattern or be able relate to something.

• Cold Fingers When Working at Computer
• Pins and Needles Intermittently When Working and at Rest
• Forearm Weakness
• Persistent Numbness in 4th and 5th digit fingertips, bilaterally
• Waking with total numbness in same digits
• Electric like sensations when lifting objects of any weight
• Occasional loss of dexterity for fine motor skills, for example using a fork
• Nerve pain along 4th and 5th nerve bundle finger in my palms
• Typical pain in underarm, scalene, chest, and scapular region described by others

To date, had brain and cervical MRI which came back normal. Did EMG which came back normal as well. PT seemed to think I showed positive abduction tests, but only a weakened pulse not absent. And I know this can be a false positive from what I've read. Very scared lately, am feeling like I am not going to be able to recover and do any sort of work. Self employed, so no workers comp or disability to speak of.

no swelling, no arm or hand color changes?

From your list right now I would guess more nerve symptoms, unless something else comes up.
But I am not a dr or an expert at any of this - my disclaimer LOL. Just lots of reading around the forums for many years and my own observations/experiences.

Do you have to put in specific constant hours of work or can you break your work day up and put in plenty time for rest & self care?:confused:

like 4 hrs work with breaks and then a few hrs off for R&R, and then back to work 4 hrs?

There's a spoons analogy, or Sharon Butler has a money analogy on uses vs recovery time.

say you start a day with 100.00 = every time you use bad posture or repetitive actions you take away a dollar - every time you rest or do self care you add a dollar back.

I know in just a few hrs when I was working I was at 0 quite soon.
I didn't have much job flexibility in a production assembly setting...:(
If I had known about TOS at the time, I would have applied for other jobs in the company that were less demanding. More brain work & less intensive & repetitive stuff.:rolleyes:

Sharon also talks about sticky tissues & adhesions that can seem to cause some very annoying sx too.
These sticky tissues can stick to nerves lymph, and vascular.

I think I have the sticky fascia issues;)
Once I got out of the worst of symptoms - a few years later, now I can do pretty much normal activities, but still have to be aware of what might be a problem maker and take extra time for R&R.

Thankfully no.

Thinking that too, but at this point I think peace of mind will help me. It's a little scary to see more than a few people on here with vascular TOS along with NTOS. :( I think my fear is having a vascular surgeon mistakingly mix up the presentation of my symptoms. I think I'd simply like to get a confirmation of "You're not in immediate danger, or any circulation issues are minor at most."

Good point, I can theoretically break up my day into a few chunks. I have been stretching and doing the work, and I know it's a slow process at best.

If you don't mind my asking, (assuming you're not able to work), do you rely on disability or? I guess it's unclear what becomes of those who are not able to continue working and how they fare.

no disability - I'm a stay at home mom/wife.

Some of the others have been able to modify their job or change jobs or careers to accommodate their restrictions/needs, and with lots of self care, massage or whatever helps them the most to get by.

Have you considered therapeutic massage? TOS is usually caused by compression of the brachial plexus nerves by one or more hypertense muscles, namely the scalenes (3 of them), coracobrachialis and or pectoralis minor; when these muscles become "locked up" due to trigger points, they can compress the nerves between muscle and bone. Before you think of surgery, see a massage therapists certified in neuromuscular therapy (NMT). Stretching alone ( a la PT) may not be sufficient. Incidentally, carpal tunnel symptoms may be caused by TOS and not a problem in the wrist.